AUTISM AWARENESS ENDS WHEN THE VIOLENCE BEGINS

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     Merriam Webster’s definition of autism is simple: “a variable developmental disorder that appears by age three and is characterized especially by difficulties in forming and maintaining social relationships, by impairment of the ability to communicate verbally or nonverbally, and by repetitive behavior patterns and restricted interests and activities.”

     Merriam Webster’s definition of neurodivergent is simple: “having or relating to a disorder or condition such as autism spectrum disorder, attention deficit disorder, dyslexia, or obsessive-compulsive disorder, which impacts the way the brain processes information. This includes exhibiting or being characteristic of variations in typical neurological development​.”

     These are the same explanations offered by doctors when we notice our child is “different”. These are the same explanations offered by doctors when we receive the final ADOS (Autism Diagnostic Observation Schedule) result. These are the same explanations offered online when we spend countless hours googling what this means for our child.

     We easily find this oversimplified, vague definition wherever we look; what we do not find is the truth. I am here to give you my raw, brutal truth of what being a parent to an autistic child with extreme behaviors in our society really looks like. I am here for the rest of you who have nowhere to turn. I am here for those of you too paralyzed by the fear of judgment you will receive when you do speak out. I am here for those of you who feel alone and isolated.

     The realities of each struggle are multifaceted and deeply challenging. Beyond the superficial definitions, the truth involves a relentless battle for resources and support. It means fighting for early intervention, navigating complex mental health care systems, and advocating for our child’s educational needs amidst bureaucratic hurdles. It’s dealing with meltdowns in public spaces and enduring the judgmental stares of strangers who don’t understand; realizing society's version of “autism awareness” ends when our child's aggressive or violent behaviors begin. It’s the constant worry about our child’s future—wondering if they will ever gain independence, find meaningful employment, or build relationships. It’s facing sleep deprivation and coping with the emotional and physical exhaustion that comes with being on high alert 24/7.

     The truth includes the financial strain that many of us face, as therapies, special programs, and additional medical expenses can be overwhelming. It’s the struggle to balance work and caregiving, often leading to one parent having to reduce their hours or quit their job entirely. It’s the strain on marriages and relationships, as the stress of caregiving can take a significant toll on partners. It includes social isolation as many parents find themselves cut off from friends and family who don’t understand or know how to help. The emotional toll is immense, with feelings of guilt, inadequacy, and grief as we mourn the loss of the life we envisioned for our child.

     Yet, amidst all these struggles, there is also hope, resilience, and moments of profound joy. The small victories—like a first word, a breakthrough in therapy, or a moment of connection—are celebrated with immense pride. The journey of an autism parent is one of extraordinary love, fierce advocacy, and unwavering dedication.

     There are graphic details, there are traumatizing stories, and there are trigger warnings. AND… There is also a narrative of resilience, hope, truth, and strength. My journey of self-love and acceptance is marked by overcoming adversity, embracing vulnerability, and finding the courage to heal. Through every setback, I discovered an inner strength I never knew existed, allowing me to rise above the trauma and move forward with renewed determination. This story is not just about survival but about thriving in the face of adversity and becoming stronger than ever before.

     My journey involves accepting my son, Justin, with all his unique challenges and triumphs. It involves embracing the battle of fighting for the resources he needs and deserves. Together, we learned to navigate a world that often misunderstood us, finding our path and building a life defined by love, acceptance, and unyielding perseverance.

     Given the detailed nature of our experiences and the persistent societal intolerance, all names and locations have been modified to ensure our anonymity.

     If you do not possess an open heart and an open mind, I thank you for your purchase which helps fund support groups for autism parents, and I suggest you do not turn to the next page.

     This, like so many of you, is our truth.

UNINTENTIONAL SELFISHNESS

     Selfish is not an evil word. Selfish is not a negative word. Selfish means what it means: a disregard for anyone other than yourself in a situation. Selfishness is a trait every human walking this planet carries. Being selfish does not imply having malicious intent; it does not imply cruelty. The word implies thinking of oneself first and foremost, which is—really read this—a natural human trait. It’s also a trauma response. A way of self-preservation. A defense mechanism. Recognizing selfishness as an inherent part of our nature helps us understand that it’s not something to be ashamed of but, rather, something to be mindful of. Redefining the emotional connotations attached to the word “selfish” is a crucial step to our success, not only as parents but as humans. When we can accept that we have been selfish, we can correct that behavior within ourselves. This self-awareness fosters growth and allows us to approach relationships with greater empathy and understanding. By acknowledging and addressing our selfish tendencies, we pave the way for healthier interactions, deeper connections, and a more compassionate society.

     This selfishness presents early in parenthood, but it masquerades as selflessness, making it a tricky characteristic to identify. The second we hold our child, they can do no wrong. They will never have challenges that we can’t overcome for them. We will be the perfect parent. We will always keep them safe. We will always know exactly what to say. This sense of denial, in my opinion, comes from a place of primitive instinctual protection. It’s normal. Natural. It is, however, still denial, and it is still selfish. Our minds create an idealized version of who we are as parents, convincing us that we can always shield our children from harm, always have the right answers, and always provide perfect guidance. As a result, this subconscious denial becomes a refusal to, through support and guidance, supply our children with the best chance they have to learn to acknowledge and manage the not-so-pretty personality traits all humans have. At least, this has been my experience.

     The guilt that comes with thinking unfavorable thoughts about our own child is, at times, unbearable; it feels excruciating, confusing, shameful, and unnatural. Pain on that level threatens to drown us, keeping us from any capacity we may have to actively and effectively parent, so we do the only thing we know to do: bury that shit as far back in our brain as we can and move on. It’s a textbook human response to emotional discomfort, really. The emotional energy required to navigate and process the intense shame felt from having less-than-enchanting thoughts about our child can lead us to overcompensate by either being excessively lenient, which leads to failing to enforce structure (because we feel guilty), or staying in denial. Both responses are selfish reactions. Both responses are rooted in concern for our own emotions, not the best interest of our child. Experience has taught me that this is more detrimental to our children than it could ever be to us.

     Although I was only 20, I do not regret becoming a mother. However, I do wish I had understood the importance of considering whether I was mentally capable of handling life’s many potential challenges at that age. Challenges that required immense patience and emotional resilience, neither of which I possessed at the time. I had a tumultuous childhood and was, consequently, suffering from undiagnosed PTSD (Post-Traumatic Stress Disorder), depression, and a severe anxiety disorder. I wasn’t taught to understand or address my mental illness; instead, I was encouraged to keep it inside or write it down. I was placed in a psychiatric ward as a teen, and though I was diagnosed with depression, I was never treated. There was no follow up. It was never discussed. Needless to say, the topic of mental health was still rather taboo at the time, and as a result, I didn’t receive the help I desperately needed. Long before I became a mother to a child with special needs, the system had already failed me in big, life-altering ways.

     I couldn’t understand why I’d be deeply activated when others seemed to always remain calm. I now know that anxiety was stepping in and taking my nervous system hostage, propelling me into an uninvited fight-or-flight response. When friends or family would come to me, during extensive amounts of time spent intentionally isolating, and tell me just to “Get up and do something,” I felt broken, like I must surely have been wired all wrong. I now know that depression was robbing me of my ability to care about basic human activities and responsibilities (among other things), leaving me feeling trapped in a relentless cycle of despair and hopelessness. I had no safe space to discuss mental health, much less understand the complexities of the psychological reconditioning I desperately needed. If these “safe spaces” existed, they did so in secret, unknown to me. Mental wellness became the ever elusive, best-kept-secret that I would spend much of my life desperately chasing. The system’s notorious empty promise.

     Since we’ve touched on the things I didn’t consider, as I walked into the world of motherhood, let’s talk about what I did consider: I did consider how cute he would be. The inexplicable joys of his first words. Laughter consuming those funny toddler years I’d heard so much about. How great it would be when he played sports, and I got to cheer him on from the sidelines. How beautiful the holidays would be, and how I’d pour every ounce of my maternal intention into making each moment mystical and magical. How much pride I’d feel when he went off to that prestigious college. How happy I would be when he married and had children of his own . . .

     Are you catching the pattern here? I was not considering what the world would look like for him. The long-term thought process only involved me—our life from my perspective, my lived experience. Was I intentionally being selfish? Of course not. The raw truth here is that all I thought about was how much joy having a child would bring me. I never considered what it might bring him.

     The fact that denial and selfishness are part of our psychological makeup infuriates me. Denial infuriates me because we, as humans, can voluntarily choose not to accept something that is right in front of us, even when it demands our attention. It’s a willful blindness that permits us to ignore glaring truths. Selfishness infuriates me even more—even the unintentional, subconscious kind— because it allowed my own parents to see right past the reality of my mental health one too many times. Their selfishness made my struggles invisible to them, dismissed or overlooked in favor of maintaining their own comfort and ease. This neglect left deep scars. Their lack of instruction and poor example left me ill-prepared for the immense challenges of raising a child, especially one with special needs.

     It was that same denial and selfishness that allowed me to look past the many signs that my own child was struggling. Like any child, I learned what I saw. My own tendency to lean into denial was a learned behavior. Programming that I unwittingly recreated. Coping skills that, as it turns out, weren’t skills at all, but finely-tuned defense mechanisms. It’s all I ever knew because it’s all I ever witnessed from the adults in my life. And the truth is: It’s likely all they ever knew too. This is generational wounding. This is generational trauma.

     I failed my son because it’s what I knew. I failed my son because I was protecting my own emotions. I failed my son because I enabled myself. I failed my son because I was entirely uneducated on what the realities of being a parent were. I failed my son because I allowed my excitement to overshadow the psychological necessities of raising a child. I failed my son because there was no open space to seek mental-health treatment. I failed my son because I was clinging, just like my parents had, to my comfortable narrative. Again, the pattern here is that it was all about me.

     While unintentional selfishness was initially our greatest enemy, it ultimately became our most valuable ally. You see, through this journey, a beautiful thing happened: I began to see (and accept) that I failed my son in all the aforementioned ways because I, first, was failed by an utterly broken system and the generations of people who came before me that never learned how to talk about the realities of mental health, much less how to treat it. But perhaps I’m getting ahead of myself. Let’s start at the beginning . . .

UNINTENTIONAL DENIAL

     When Justin was 13 months old, he was not like other 13-month-old children. To me, that just meant he was more unique than all the other children. The differences he displayed were easily overlooked because, well, he was my perfect little boy, and nothing could have been “wrong” with him.

     I failed to recognize or accept that his lack of eye contact meant anything. He was always smiling and physically affectionate, so who cared if he didn’t want to stare into my eyes? I failed to recognize or accept that his repetitive opening and closing of cabinet doors meant anything. He was just exploring his surroundings, demonstrating a healthy curiosity, and playing. I failed to recognize or accept that being non-verbal at 13 months was considered delayed. He was clearly just a little quieter than other kids. I failed to recognize or accept that his absolute refusal to eat most foods, no matter how enthusiastically I presented them, meant anything. He was a picky eater, super common. I, as his mother, just needed to find what he preferred. I just needed to do better and be more. I hadn’t known anything meant anything because every single red flag paled in the face of my momma-bear love. I was in blissful ignorance, ignoring every single sign, right up to the day my son stopped responding to my voice.

“Justin…Justin? . . . JUSTIN!”  

     He didn’t flinch. He didn’t turn around. He did not acknowledge it whatsoever. He did not acknowledge me whatsoever. 

     Instead, he screamed. And I don’t mean an upset-baby cry that you can calm with a hug or a fresh diaper. I mean full-on, nearly-tearing-his-vocal-cords screaming. He didn’t move a muscle other than the ones it took to scream or flail (if I tried to touch him). He screamed that day for three hours and nothing I did calmed him. I put on Veggie Tales, his absolute favorite show. Nothing. The screaming only intensified. I tried to sing to him. Nothing. The screaming only intensified. I sat in that room for three long hours and, as my heart shattered in fear, watched horror unfold before my eyes.

     The answer seemed straightforward, at least to me: He must be sick. There was no need for alarm, no need to wonder why my 13-month-old had just screamed himself voiceless; it was probably just a bad stomach ache. I rationalized it away, thinking it was just a passing discomfort. Temporary. As I lay in bed that night, however, trying to will myself to swallow my own justifications long enough to get to sleep, terrible thoughts began to creep into my head—thoughts that something might be wrong with my precious son. I thought harder about the aggressive behaviors he was displaying. That’s when it happened for the first time: In that moment, I met shame face-to-face. As soon as those thoughts took shape in my head, it washed over, filling me with doubt and nearly crushing me right then and there. “How dare you think such a thing? Ugh. Push it back. Block it out. Shame yourself to sleep, you terrible mother.”

     In hindsight, these were early signs of sensory processing issues, common in children with autism. The lack of response to his name being called, the extreme reaction to familiar comforts, and the intense, prolonged screaming were all red flags I couldn't see at the time. My lack of awareness about developmental milestones and potential issues made it difficult to recognize these behaviors as indicators of a deeper problem. The stigma around discussing mental health and developmental disorders further clouded my judgment, making it nearly impossible to acknowledge that something might be amiss. This period was marked by a mix of denial, unwitting ignorance, and an overwhelming desire—some might even call it a need—to believe that everything was perfectly “normal”.

     I desperately needed someone to tell me what I wanted to hear, to absolve me of the guilt I felt for the fears I’d started to entertain about Justin. My first call was to his pediatrician, confident this was a simple medical fix. A sick-child visit would surely set things right. The doctor examined him and asked me a series of questions, concluding with inquiries about his repetitive behaviors (behaviors I had assumed were due to pain). When he suggested it might be early signs of autism, I wasn’t too worried. I asked, "Okay, great. What antibiotic do we give him? Does he need a liquid diet?" I was expecting a straightforward solution for a straightforward diagnosis, something easily treatable. Instead, the doctor began to explain that autism is a psychological disorder affecting cognitive abilities, social interactions, and communication skills. I learned then that autism wasn't something that could be cured with a simple prescription or dietary change. Shocked by this possibility, I responded angrily, accusing the doctor of carelessly misdiagnosing my son. It felt like the ground had shifted beneath me. I wasn't ready to accept that this might be a long-term journey without a quick fix.

     Autism was a word I had never heard before having Justin. It was the early 2000s, and I didn't know anyone with autistic children. I did not know anyone, for that matter, who was autistic, and autism-awareness was in its infancy. When I got home, I secretly researched autism, feeling embarrassed and conflicted. One moment I was a guilt-ridden mother, and the next, I was determined to learn more. 

     Despite all my research, I struggled to understand what autism actually was. Its complexity prevented me from achieving a firm grasp on what I was dealing with. So, I started researching other plausible conditions that were easier to comprehend. Easier to swallow. Each new possibility gave me a temporary sense of relief, a glimmer of hope that there was a simpler, less intimidating answer. With his lack of response, screaming, and absence of eye contact, the closest condition I could find was deafness. Deafness was something concrete, something that could be addressed with hearing aids or other interventions. Deafness was something I had heard about—something I’d witnessed in others. It didn’t feel ideal, but it felt less foreign. It was, at least, a condition with a clear path forward, unlike the nebulous and unpredictable journey that autism presented. Momma-can-make-it-better mode: Activated!

First call—pediatrician: “He needs to be seen by the ENT. I’ll send a referral.”

Second call—ENT: “We have not received the referral from his pediatrician yet; in the meantime, check your insurance coverage.”

Third call—insurance: “We need the referral from the doctor in order to process the approval.”

Fourth call—pediatrician (again): “I haven’t sent the referral yet. I’ll make sure it happens today.”

Fifth call—ENT (again): “We still have not received the referral from his pediatrician.”

Sixth Call: Learned all the calls had to be made again.

     About three months after the initial concern, and one very quick appointment, it was confirmed that my son wasn’t deaf at all. He was, in fact, as healthy as a horse. “He’s perfectly fine. There’s nothing to worry about. He will talk soon. Some boys develop later than girls. Don’t worry. Don’t worry. Don’t worry.”

     I wish I had listened to the one person who had suspected autism. That doctor had seen something I couldn’t—something I had not been ready to see because it was something I didn't understand. I know now that I should have asked more questions, sought a second opinion, and pushed for further evaluation. I wish I could go back in time and encourage myself to look more closely at the signs, to silence my fear long enough to listen to that doctor (and to my maternal instinct). I regret not pursuing it more aggressively and promptly. It wasn’t the first time, and it wouldn’t be the last, that I felt I should have done more for my son.

UNINTENTIONAL IGNORANCE

     Two months later, Justin still wasn’t talking. His refusal to eat had become severe, leading to near starvation. The repetitive opening and closing of cabinets turned into slamming doors and banging his head against them. His smiles and laughter were seemingly replaced by hours-long screaming sessions and self-harm—beating his head against hard surfaces, scratching himself, and punching himself. He would throw his food across the room and slept only a few hours each night. With his father often away for work, I was growing exhausted and desperate, handling this alone. My boy was suffering, and I knew something more was happening. I reached out to his pediatrician for an emergency appointment. That day, life as I knew it changed forever. I was ready to listen. This time, when the doctor said, “autism,” I heard him loud and clear. 

     The weeks that followed were somehow less worrisome—it’s funny what can happen when you finally get a sliver of clarity in what feels like a sea of despair and confusion. We were referred to a developmental-behavioral pediatric clinic for evaluation. Miraculously, the first appointment with the diagnostics center was that same week. A month later, we had a speech and language evaluation. While these appointments happened quickly, the official ADOS evaluation would not happen for another two years. I believed the time lapse must have meant it wasn’t that serious; it meant there must be children whose needs far exceeded Justin’s. I had already accepted, though, that he was autistic, even without the official results. I was now a happy autism-awareness momma, and I was all-in.

     Though his behaviors continued, my mind, in an attempt to defend both my son and myself, had already normalized them, so it never dawned on me that others wouldn’t fully understand or extend compassion towards our plight. I was researching all I could about autism—this time not in shameful secrecy—and came to believe that it meant he would be this introverted little boy with unique abilities. However, as I delved deeper into my research, I noticed that many sources labeled certain behaviors simply as "aggressive." This left me confused and disheartened, as I was searching for a deeper understanding of his actions and their underlying causes. The simplistic descriptions did little to prepare me for the complex reality of parenting a child with autism where each behavior has its own context and reason. I thought the world would understand his “condition,” that he might even grow out of it, and that it was something to celebrate. All positive things. I could easily get on board with that.

     I thought we had an answer and that some sort of treatment would start any day. I believed I had done all I needed to do in order to properly “tackle” autism. I was a super mom! Our friends and family were on board to spread autism-awareness. Every single conversation was positive and uplifting. I genuinely believed the way society viewed autism was everything it wasn’t. To every autism parent reading this: I promise I am shaking my head right along with you because we know. We know how innocent our thoughts were when we first heard the word “autism” uttered in relation to our children. We thought we had it all figured out and that everyone would understand. It’s a feeling we can all relate to.

     Over those two years, we learned sign language together so that we could communicate. I taught him the same things any parent teaches their children at that age: numbers, letters, colors, shapes. Justin has always been incredibly bright; he picked up sign language much faster than I did and became quite a little sassy pants with those quick fingers. One thing I am grateful to have understood early on was that a lack of verbal communication did not indicate that he wasn’t listening and taking information in.

     During this time of apparent progress, I also gradually stopped taking Justin to public places because he would scream and fight to get away from me. I didn't realize how much the stares were affecting me, how much his surroundings were affecting him; my baby was innocent and couldn't help it. I fully understood that, so why did no one else? I had no idea that the anxiety he was experiencing matched the intensity of my own. There was only one song I could play, at any given time, that he would not react to: "You Are Not Alone" by Michael Jackson. Looking back, the irony isn’t lost on me that, as we were listening to those lyrics on repeat, we were, in fact, becoming more and more alone. Support and understanding from others began to fade. Friends and family became judgmental and weren't shy about their opinions, and many friends even told me they were no longer comfortable with Justin being around their children because of his meltdowns. This led to years of parental shame, the loss of several friends, and a nasty bout of forced isolation. In the midst of it all, and without my conscious awareness, I began resenting my son’s autism (and society).

     Unaware that the intense behavioral challenges Justin displayed were uncommon among non-autistic children, I opened up about his meltdowns, which unfortunately led to more shame and judgment against both of us. "I would never let my child act like that." "Whoop his ass, you're being too soft on him." "He’s throwing tantrums because you let him get away with it."  "He will talk when you stop giving him everything he wants." I quickly learned to keep my mouth shut about my son's struggles. I stopped talking to anyone about the true, dark parts of autism that Justin was suffering through. I stopped trusting others with my fear, my battles, my pain.

     By this point, he was non-verbal (except for grunts), potty training was out of the question, and he would only eat chicken nuggets. His meltdowns were at what I naively assumed to be their peak, and I was an exhausted mom who was still hoping it wasn’t as overwhelming as everyone else insisted it was. After four years, it had become routine. This was just our normal.

     I started reading mom blogs about how special and rewarding it was to be an autism parent, and let me be clear, here: It is, on so many levels. Unfortunately, though, I was subconsciously boosting my own ego to avoid fully accepting what was unfolding before my eyes. I started attending support groups, listened to stories of encouragement and hope, and felt motivated to be an autism-awareness advocate for my boy. I convinced myself that everything would be okay—that one day, everyone would understand.

     Had I fully accepted from the beginning that Justin needed more help than I was capable of offering, I believe we wouldn’t be where we are today. If society had caught up with autism as quickly as autism caught up with us, we might have had a different outcome. If there had been a more straightforward path to resources and less judgment from those closest to us, things could have been different. That is why I am writing all of this down. I regret not being strong and brave enough to fully accept Justin’s condition sooner. I could have educated myself on what was to come and forged a much different path for my boy. Had I not remained ignorant to the reality of how society would receive him, I could have initiated the change we so desperately need in our community much earlier. I have many regrets and just as much compassion for the young, unintentionally ignorant mother that I was.

UNINTENTIONAL ISOLATION

     Not long after he was diagnosed, we relocated to a state where I thought we would receive more support and Justin would have access to more resources. His father and I had divorced, and with his work schedule, it made sense to find a place where our son could thrive. We only knew one person there, and in a more open-minded state, I believed we would find acceptance. Since we had no history there, and I felt confident that I could recognize Justin’s triggers before a meltdown, I didn’t feel the need to alert anyone to the possibility. There was even a preschool option. This was our fresh new beginning. We were safe. I genuinely believed those early years encompassed all the aggression, chaos, and stress we’d endure on our autism journey. I believed the hardest years were behind us. What I didn’t realize, though, was that I had already developed resentment towards my boy—not because of who he was, but because of the challenges I was facing.

     For four years, I restrained Justin to prevent him from harming himself, sometimes to the point of bruising him. His go-to self-harming behavior was slamming his head against the marble fireplace. The terror that comes with this behavior is something only those who have experienced it can understand. I spent four years doing my best to keep him from biting and hitting me, often enduring physical violence to avoid restraining him too tightly. I got 2-3 hours of sleep on a good night. I watched loved ones walk out of our lives because they "could never" handle it. I endured brutal shaming as a parent, and Justin was often written off as a "bad kid." Four years of this. I. Was. Traumatized. And I had no idea. Actually, accepting that I was traumatized by all of this did not come for years. Fortunately for Justin, I recognized his trauma much earlier than I did my own.

     While I told myself this great new life was beginning, I failed to realize that what I had actually done was run as far away from the shame as I could. I tucked us into a little bubble, isolating us from everyone else’s world, from reality. I had friends I would go out with, and Justin and I would visit places, but we both had severe anxiety and lived in chronic stress responses, so our outings started to dwindle, little by little. Everywhere I went, I did so with fear and anxiety, constantly worrying about how Justin would handle any given situation, or how it would handle him. I made excuses for any potential behaviors in an attempt to shield him from the inevitable judgment. At the smallest notion that something might go wrong, I would rush him home to safety. The true reality of life at home with Justin became my darkest secret. I kept every detail that wasn’t a huge autism win out of all conversations.

     I had unintentionally isolated us in the world of autism. I had been traumatized by society simply for being his mother. I had been traumatized by having my support system abandon me. I had been traumatized by people staring during public meltdowns. I had been traumatized by confrontations that ended friendships. I had been traumatized by the judgment my son faced for something he couldn’t control. I had been traumatized by accepting the reality that those years of joy, laughter, and shared experiences among friends and family just weren't in the cards for us. This was grief in a whole new light. Still, I hoped the worst of it would only consume the years Justin wouldn’t remember. I believed one day, everyone would understand, but until that day came, the world was our enemy because of the people in it. I became convinced that the only way for my son and I to be truly safe was for me to take it all on for both of us. Solo. So, that’s precisely what I did.

UNINTENTIONAL COMPLACENCY 

     Once we settled in, Justin started attending a special-needs daycare, and I began working. Although I applied to many other, more affordable daycares, they couldn't accommodate his behaviors. My budget was stretched to the limit, but I felt fortunate to be able to provide this resource for him. Despite the financial strain, knowing he was in a place where his needs were understood and met brought me a sense of relief and gratitude. His starting at a special-needs preschool was a significant step in my journey of accepting the truth: I had a special-needs child. Being around other parents whose norm was therapy appointments, doctor visits, and conversations about medical treatments and diagnoses was a comfort that words can hardly capture. Watching other children who were like Justin was incredibly reassuring.

     During this time, he had birthday parties, and other kids actually came. He had events to attend and friends to attend with. While I still dared not share the intimate details of our struggles at home —certain no one else had stories like mine—I found a way to relate to other parents. Life felt “normal.” Being a mom felt “normal.” Justin was doing all the typical things other children did, and his aggressive meltdowns became less frequent. Also, during that time, he was on a medication called Risperdal.

     Interacting with other parents of autistic children brought a mountain of information. There were endless lists of resources but rarely discussions on how to access them. I hadn’t considered medication because I believed autism should be treated with therapy, not medicine. Additionally, it had never been suggested as an option. Then, I met a parent who was honest about her home experiences and told me about Risperdal. She shared how her daughter was sleeping better, the aggression had subsided, and their life had improved. While it felt like a selfish move, both Justin and I needed a break, and the therapy provided at school, alone, wasn't enough. I was spending every dime on the best preschool and insurance I could afford, yet we’d seen no progress with his behaviors, which were becoming more aggressive. I was scared for both of us. Knowing the possible side effects, I weighed my options. I was desperate. Exhausted. Defeated. Although I carried shame over this decision, I also felt angry that no one had told me there was any other way. I went to his doctor, requested the medication, and had it the same day.

     Life calmed down. Justin was sleeping, which meant I was finally sleeping. His violent outbursts became less frequent. We could go to the store, and while my anxiety remained fully present—ever ready to fly into action at any sign of an outburst—his seemed to be almost entirely gone. He would sit, calmly. We visited theme parks and water parks, and people accepted him (and me). I was finally experiencing regular motherhood (whatever the hell that means). Since he’d become verbal some time after the age of four, I even decided he was ready for public school when he turned five. All seemed well.

     I watched him play outside with other children; his smile and laughter brought me an immense amount of  joy, which was a welcome breath of fresh air after all we’d experienced. New friends brought their children over. He could attend Kids' Club, allowing me time to hit the gym. Alone time felt optional. We were slowly coming out of isolation, and I was healing from the trauma of those five long years. The darker parts of autism seemed to have vanished. The silver lining wasn't just silver; it was as bright as the sun.

     I became so complacent in our new normal that the weight gain I noticed in him was, shamefully, easy to ignore. We finally had peace. What was a little weight gain in the face of that? It was easy to attribute it to years of chicken nuggets for every meal. I threw myself back into denial, trying to introduce healthier foods and tricking him with vegan chicken nuggets. Deep down, I knew the medication was having adverse effects and he probably needed to come off it, but I was terrified the aggression would return. For a while, I refused to admit that I had messed up, even to myself. I’d grown comfortable in our newfound peace, and I wasn’t ready to part with it. A mother’s intuition is strong, though, and when reality got louder than my denial, I realized I’d clung to our new “normal” at the expense of facing the toll the medicine was taking on Justin. Once more, I felt that crushing mom-guilt that told me I had failed him. That I should have done more.

INTENTIONALLY WAKING UP

     I made the decision to stop the Risperdal when Justin was seven—he’d gained weight at such a rapid rate that I could no longer deny the detrimental effects the medicine was having on his long-term health. The first few months off the medication were all right. He had been in special education for some time, and I believed the services at school were sufficient. For several years, I had stopped reaching out for help. The dead ends were discouraging, and quite frankly, the anxiety I felt over making phone calls to seek answers on my son’s behalf had long since taken over my rationality. Things at home were still somewhat calm. While he was aggressive again, it wasn’t “as bad as before,” so I thought we were heading in the right direction.

     I hadn’t continued much in-depth research on autism, but we attended the walks and plastered puzzle pieces everywhere. We did all the things many of us think we are supposed to do. I figured I knew what I needed to know; after all, I had been living this for seven years. I was an expert on autism, let me tell you. In my naive little brain, I thought, "I’ve got this." Honk if you love autism, y’all!

     I was so wrapped up in the superficial aspects of the autism-awareness movement that I failed to realize how much more there was to learn and understand about my son and his needs. I believed that participating in events and displaying symbols of support was somehow enough. The reality was far more complex, and my overconfidence blinded me to the deeper challenges we were still facing. In hindsight, I can see the failure wasn’t mine; the true failure was the lack of available information. The failure was systemic.

     It all seemed to hit at once, like a flood of reality rushing in and threatening to drag me out in its undertow. I began getting calls from the school more frequently. I was regularly leaving work to remove him from school. Justin was getting agitated more easily and being more aggressive with his peers. Emergency IEP meetings were held, and the “services” through the school system increased. I started to feel the tension from the school district, my boss, and others around me. Once more, I felt increasingly alone. Isolated. Fearful. I slipped, with alarming ease, right back into a state of denial.

     Deep down, I knew the aggressive behaviors would return. I knew the medication had helped manage this aspect of his autism, and the thought of it coming back, full force, was debilitating. Despite these fears, I couldn't bring myself to fully accept the potential consequences of taking him off the medication. My anxiety and exhaustion clouded my judgment, and I clung to the hope that things would somehow improve on their own. But as the situation at school deteriorated and my support system began to crumble, I realized that my complacency and denial were failing Justin once again.

     When the physical aggression returned, I tried to justify it to myself, but I knew it was worse than ever before. The relentless screaming, the hitting, the shattering of objects, and the heartbreaking self-harm—it was all back with a vengeance, almost as though it were making up for lost time. This time, he was eight years old and had grown stronger, making his meltdowns even more challenging to manage. This time, Dad wasn’t there to help me restrain him, leaving me to face these episodes alone. This time . . . was different.

     With each episode, which became almost daily, I clung to any possible explanation other than the harsh reality. Maybe he was just tired, or maybe it was a phase. I kept telling myself it was anything other than what it actually was. But then came the day that shattered all my comfortable illusions—the day Justin pulled a knife on me.

     It started like any other meltdown, but then, in the midst of his rage, Justin grabbed a kitchen knife. The sight of my son holding that knife—its sharp blade in his small hands, his face contorted in anger and confusion—sent a wave of heartache and terror through me. My heart pounded in my chest, and my mind raced with panic. There stood my sweet boy, transformed, against his will, into someone I hardly recognized. The room seemed to close in around us. I was frozen with fear, acutely aware of the danger we both faced in that moment. I was terrified for his safety, knowing he could hurt himself in his distress, and I was equally afraid for my own life.

     That was the day I accepted that autism may be more involved and that I needed to become more educated, fast. I didn’t know it then, but a war was coming, and I was outnumbered before it even started. That was the day aggression turned into violence.

LOSING RELATIONSHIPS

     When people walk out of our lives after we’ve trusted them enough to fully let them in, it reconditions how we approach relationships. Family, friends, romantic partners, business acquaintances, and various others are faced with a wall of impenetrable titanium that we build to protect ourselves and our children. After all, we’ve all been wearing armor, to some degree, for our children since they were born. From the moment they enter our lives, we begin training and preparing for every battle that may come our way. 

     Our armor becomes a second skin, shielding us from the misunderstandings and judgments of others. We learn to anticipate every challenge, ready to shield our children and fight for their needs. Each scar we gain on the battlefield that is parenthood tells a story of resilience and determination, a testament to our cultivated strength over the years of fighting the good fight. But even the strongest warriors need a moment of respite. Time to breathe. To regroup. To build our lines of defense. We gather our strength, prepare our strategies, and turn to face the next challenge with renewed vigor. We do this, of course, not just for us, but for our children. It’s these lines of defense that ensure we can continue to unwaveringly protect them from the harsher realities of the world.

     Initially, it was effortless to cast blame on the other party. I’d tell myself that they were ignorant, selfish, cruel. They refused to understand. They were in the wrong for judging a child. I justified it however I could to keep the dreaded abandonment at bay. (Although I wasn’t consciously aware of it, I was suffering from what I’d later learn was significant abandonment trauma from my own childhood—more on that later.) Suddenly, it became a lot easier to push people away before they even had a chance to get past my first line of defense.

     After watching so many people willingly walk away, I made sure I could run before they could walk. I became hyper-attuned to every look, every slight change in facial expression and posture, waiting for any moment to defend my child as aggressively as need be. In any given attempt at a relationship, I would quickly reach the point of assuming that this person could surely be no different than that person—although, sometimes they were—so I’d sabotage it all instead of waiting on them to disappoint me by inevitably pinning some blame on my son. Self-destruct mode: Activated.

     Naturally, and unfortunately for Justin and me, this created a response cycle of anticipating rejection and isolating from others in order to avoid further hurt. I now know, from talking with other parents of special-needs children, that this is yet another shared psychological battle we face. It's also one from which we strive tirelessly to protect our children.

     More times than I can count, I have locked myself in a room and cried when someone chose (or when I forced them) to leave. I understood why they chose to go, but that didn’t make it hurt any less. I also understood, at least to some degree, that I pushed many of them away. Again, that didn’t make it hurt any less. I didn’t cry over my losses; I cried for Justin’s losses because I knew he had only done what his brain had urged him to do. I cried because I felt that I had to push people away to protect him. I cried because I knew, with each loss—whether they walked out on their own or because I pushed them away—the lonelier he would be. The more and more he asked about this person or that person, the less and less valid my responses would grow. I cried because I started to believe that I was all he would ever have. That sweet, empathetic, passionate child would be suffering a life of isolation, and it would be my fault.

     Or was it society’s fault?

     Or was it autism’s fault? 

     The inner battle was so very constant and so very real. It felt as if we had been cast aside, expected to manage on our own, without understanding or support—without community. The thought of others defining Justin, and his character, by these behaviors that existed outside of his control destroyed me. Every sideways glance, every judgmental comment from strangers, and every friendship that faded away because they couldn’t “handle” Justin’s behavior weighed heavily on me.

     I was starting to feel resentful. Resentful towards others, resentful towards loneliness, and even resentful towards being a special-needs mother. (Ouch.) It was the truth, but as they say, “The truth hurts.” And this particular truth destroyed me.

     It was time to armor up, once again, and step into a new emotional battle: understanding. Each time I lost a friend or loved one, I had that dreaded, oversimplified thought: “Yeah, I get it.” I did get it, and it was still painful. Not was . . . is. It is still painful. And it’s not only painful; it’s also complex and confusing.  

     Every time, without fail, I’d find myself playing through the same cycle of thoughts: They are only protecting themselves and their children. After all, that wasn’t the first time Justin hit their child. That wasn’t the first time we went to a BBQ and he screamed so loudly that their neighbors called the police, thinking someone was being abused. It wasn’t the first time he broke something in their house (in a way that appeared intentional but never was). It wasn’t the first time I’d invited them into my home, into my daily lived experience, only to have them listen to him scream and watch, in horror, as I tried to restrain him. It wasn’t the first time I had awkwardly begged them to help me restrain him so he wouldn’t harm himself. Hold him down. Remove him. Yeah . . . I get it.

     And I still get it. I also get it that they didn’t get it, that they could not. Could not understand that isolating my child caused so much more harm. Could not understand that it wasn’t me being a lazy or bad parent. Could not understand that a lot of his behaviors were not intentional. There was so much they couldn’t understand, and maybe some of that was because I was never sure what I could let others see. Entering into the life of someone with autism, or a parent of an autistic child, necessarily requires an open mind and a willingness to be understanding—to at least try.

     And many did try. It wasn’t entirely their fault; I can see that now. I can also see, with a glistening clarity, something else: Somewhere along the line, society started to glamorize autism. It took the cold, hard truths and twisted them. Censored them. Made them more easily digestible. Molded them to fit this evolving narrative that was being produced, one that focused only on the lighter, less severe parts of autism. Maybe the intention was genuinely to spread awareness in positive ways, maybe it was to create a movement, maybe it was about denial, and maybe they didn’t even realize it was happening. I’m quite sure there were a number of contributing factors, but here’s the reality: They made autism into a lie, and they robbed us, in the process, of the truth (which, by the way, only further isolated and shamed those of us living with the less-than-glamorous versions of autism.)

     Maybe the new narrative wasn’t entirely a lie, but it was, at least, a half-truth that left out a significant percentage of the autism population. Where was the awareness for those of us silently struggling to make it from one moment to the next? Where was the community (and systemic assistance) for us when we were desperately trying to find help for our children who displayed behaviors society deemed less appropriate, despite the fact that they stemmed from the same condition? WHY did it seem like the second I mentioned aggressive behaviors the shiny, bright autism-awareness door got slammed in my face? Why was it that the darker sides of autism were being left in the shadows, dragging those of us who experienced them along for the ride? Justin was more than his meltdowns. He was more than his moments of confusion and frustration. Yet, this new narrative brought with it a narrowed lens of what autism was, and that lens reduced him to those instances, ignoring his inherent sweetness, his intelligence, and his unique perspective on the world.

     So, again, I get it—I get the fact that the lack of accurate information may have confused others. For all of you who tried, I want you to hear me: I understand. You’re okay to be okay with your decision. Thank you for trying.

     While I hope all parents will read this book, I’d like to now specifically address those of you who share in this battle—my fellow outside-the-narrative autism parents, the ones whose children’s symptoms don’t fit the glamorous, circulating account of what autism looks like; at first, we misplace our anger and frustration, and then, we internalize it (which is honestly just another way of misplacing it). For those of you in two-parent relationships, I know you have frequently fought, simply out of frustration and confusion. I see you, and I am here for you. For those of you in the dating world, I understand that you eventually started giving up or kept your child wholly isolated from the relationship. I see you, and I am here for you. For those of you with large families, I know you have dealt with whispers and judgments from those relatives that made family gatherings increasingly harder and harder to attend. I see you, and I am here for you. For those without families, I know you wish you had someone, anyone, to give you unconditional love and support while navigating your reality. I see you, and I am here for you. 

     Raising an autistic child isn't just about the parents—I know this—and it is very much about the parents, or it should be. I wholeheartedly believe the parent’s plight deserves awareness and support too.

     Now, back to the rest of you—the larger audience: If you've ever felt less than, unworthy of love, or unworthy of human interaction, then you understand the deep pain that autistic humans and their loved ones often endure. The sting of isolation and the ache of being misunderstood can be all too familiar in our world. Society often keeps parents of autistic children in a corner, assuming our children's actions are choices rather than symptoms of autism. This pervasive misunderstanding only serves to magnify the loneliness and heartache. The real reason behind these behaviors is neurological, but there’s a missing acknowledgement of this reality—a lack of empathy and support—which only compounds the emotional toll on families. Because autism has been glamorized, people don’t know what to do with the darker parts. This only creates a bigger wedge between “most people” and those of us whose day-to-day realities do consist, off and on, of many of those harder-to-swallow truths. Of course, there is still so much beauty in our experiences, but this unseen wedge furthers the divide until it feels like an us-and-them dynamic, keeping the world from witnessing the beautiful parts because they’re overshadowed by the rest of it. 

LOSING  STABILITY

     I was most anxious when I found myself alone, without a village, without anyone to talk to about what Justin and I were experiencing, whether good or bad. My mental health was deteriorating, and he was not better for it. I can admit that I would take unintentional advantage of whatever village I had, when I had one, because doing life alone was exhausting. Having someone to watch him when I needed to get out of the house for whatever reason—someone I trusted, someone I knew could “handle” him—was a relief. Having others to be around during holidays, so he could be surrounded not just by people who understood but by people willing to show him acceptance and kindness, was a relief. Having someone I trusted to accompany us to public places to help keep him calm was a relief. I needed relief. We both did.

     To be honest with myself, and with you, I knew I was taking advantage; I knew I needed to prepare for the eventual burnout, and I still couldn’t help it. I faced countless mental obstacles, which left my emotional stability balancing on shaky ground. The traumas were stacking, the anxiety was escalating, and in times of solitude, it was all I could do to hold it together. Sometimes, I didn’t (because, sometimes, I couldn’t).

     The emotional toll of not having anyone with whom to share the joys and wins of autism was just as intense. Justin was, and is still, the most compassionate person I have ever known. He has never known how to be mean or cruel. He has never known how to look at people with judgment. These behaviors are learned. He never comprehended the world was receiving him so negatively because he only viewed the world with love—only saw it as a place of love. Over the years, I was accused of “over-loving” him, and maybe I did. Honestly, maybe I still do. But I know that, had I not, he would have been as emotionally unstable as I was; he would’ve felt as worthless as I did. I was not going to let that happen, so I fought back the only way I knew how, with a mother’s love. I could not fathom why people couldn’t see through his behaviors to the beautiful soul that I knew he was. I became enraged that society, as a whole, was rejecting this gift. The compassion and empathy I had gained over the years were fading fast.

     Initially, staying strong meant detaching from myself as much as possible so Justin wouldn’t be aware of my struggles. He had been, has been, and will always be, innocent regarding the symptoms associated with autism. Autism isn’t a disease or something to be feared, and it’s also unpredictable, unstable, and unfair in many ways. I know you’ve heard me focus on the harder parts—simply because those are the parts not voiced frequently enough, if at all—but don’t get it twisted: There are aspects of this condition that still amaze me and leave me smiling. For instance, the way autistic individuals view the world is extraordinary. It is a gift that we neurotypicals will never fully understand. Getting to be the parent of an autistic child is about as close as we can come to seeing the world through their eyes, and what a beautiful world that is.

     Autism just is—it’s neither inherently good nor bad—and it comes with a wide range of attributes, ranging from beautiful and breathtaking (in a good way) to hard, challenging, and even sometimes terrifying (in less-than-good breathtaking ways). The more we, as a society, refuse to accept that, the more our children will continue to suffer. Autism, like humans, is full of the good, the bad, the beautiful, and the ugly, but it does not define our children. It simply doesn’t have that power, but it can shape the complexities and unpredictability of our daily lives.

     Back then, my emotional stability was already wrecked, but my financial stability was solid . . . until it wasn’t. In total, I have been fired from seven jobs. Seven different supervisors told me I had to be let go because of the number of times I had to leave work—not because of my work performance but because I was unreliable, constantly late, and, on some days, too emotional to focus. (Sure was, boss man! Ya think?) I was a single mother of a special-needs child, running on years of constant shame, guilt, minimal sleep, fear, and untreated mental illness.

     Seven times, I have emptied my desk, walked to my car, driven to the nearest place to park, and cried until there was nothing left in me. Seven times, I have all but cursed the people who said the words “We have to let you go.”. And, still, all seven times, I would think, “I get it,” before I even made it home. Because I did. Seven companies needed me to be something I was incapable of being. I was the parent of an autistic child with severe behavioral issues and zero fucking support. That took all of me—that was all I had the capacity to be for a long time. I tried, but there was just nothing left in the reserve tank.

     And I do get it. To all seven employers who had to make that decision: I get it. Thank you for giving me the chance to begin with. Because of you, I began to pave my own path, one that would eventually be worn in from my trudging—the path that eventually led to the career I needed to give my son what he needed. I appreciate all that I was taught, all that I learned, even the hard-won lessons that felt, at the time, impossible and unfair and just all wrong. Your actions pushed me to grow stronger and more determined, and for that, I am truly grateful.

     My generation is still navigating the delicate balance between work life and personal life, a crucial conversation that needs to happen sooner rather than later. In fact, this topic alone could fill an entire book.

     Every day was unpredictable and I tried desperately to maintain a solid routine for Justin. Still, with everything collapsing around me, it became increasingly difficult—almost impossible—to find the stability needed to keep a consistent schedule. Chaos is a significant trauma trigger for me, and the roots of that trauma run deep, stretching through some difficult teenage years and reaching all the way back into childhood. Growing up in an unpredictable environment left deep wounds in me, making stability an essential component for my mental well-being. I had always been able to keep myself mentally balanced as long as I had stability in one way or another. It was my anchor, the one constant that helped me navigate the emotional storms.

     The lack of awareness and societal stigma surrounding mental-health issues, at the time, made it even harder for individuals like me to seek and receive the help we needed. Mental health was still a dubious topic, which was unfortunate because, in order to have any hope at healing trauma-related and trauma-created conditions, a significant amount of intentional care is necessary. I needed, not wanted, resources to equip myself with effective coping strategies. I needed, not wanted, emotional support. Most of all, though, I needed, not wanted, a better understanding of my own mental health struggles so that I could be the mirror my son needed.

     Mental illness is indisputable, and it isn’t going away. It’s time to talk about it. All of it. It’s BEEN time. By fostering open conversations about mental health and reducing stigma, we can create a more supportive environment for those struggling with trauma and other mental-health issues. Access to mental-health care should be normalized, as it is essential for overall well-being and quality of life. Another topic that could fill a book, and it’s one that, in many ways, serves as the undercurrent for this one.

LOSING YOURSELF

     Emotional stability wrecked? Check. Financial stability wrecked? Check. I found myself battling loss at every turn, and it somehow got harder each time. With every struggle, I gained new fears for my son. If I was having such a hard time keeping my life together, how would he make it as an adult?

     As the parent of an autistic child, I’ve spent considerable amounts of time wondering how my child, and others like him, would navigate this world. Some nights, I stayed up, stricken with anxiety about Justin’s future. How would he ever get (and keep) a job? Would he have real friends? 

     For a time, his father was minimally involved, mostly due to his own denial, and I couldn’t help but wonder if Justin's autism was the reason for his father's absence. Resentment bubbled up inside of me and threatened to spill out onto everything I touched (although I couldn’t yet pinpoint its exact source.) Many of my beliefs about the world and myself had been proven wrong, leaving me feeling utterly lost and unsure of where to turn. Unsure of anything, really. The more incidents that occurred, the more the resentment built. The more the resentment built, the more I pushed it down, out of my mind. I fought and fought, denied and denied. I projected that resentment onto everything and everyone until there was nothing left to project it on. The truth is, I wasn’t only resentful towards his dad and others; I was fighting resentment towards Justin for his behaviors, which were, of course, a direct result of his psychological, physiological, biological makeup.

     Parents, if you've never had to fight resentment towards your child, I am genuinely happy for you. You’ve been spared a very unique, excruciating form of mental torture. It is an exhausting and soul-crushing experience. As the days went by, it became harder and harder to convince myself that it was his condition causing these behaviors and not who he truly was. Each meltdown chipped away at my resolve and patience. At that point, there was zero validation, only a heavy burden of blame and guilt weighing on my shoulders. No one else seemed to believe his behavior had anything to do with autism. Despite often having good intentions, friends and family regularly dismissed his actions as mere misbehavior or chalked it up to poor parenting. There was no real understanding that sounds physically hurt his ears, that his little body was living in a constant state of anxiety. 

     It became increasingly difficult, even for me, to separate who I knew Justin was from the behaviors he displayed. It felt harder to be the strong, fierce mother I had always been—the mother who understood the difference, nurtured her child, and did everything she could to help him. I became triggered by my own child, and it broke my fucking soul. I had become a caretaker, at best. I dedicated myself to giving him the most “normal” childhood, yet, no matter the activity, whether it was the first time or the tenth, it would always end the same way. The moment he had a meltdown or became violent, it was the last time we could do that activity. Each shattered attempt at normalcy felt like a knife twisting deeper into my heart.

     My life became so scattered and confusing that my identity as a woman, a mother, and a human became completely warped. I had once been a hard-working, outgoing person, but now I didn’t recognize myself. The vibrant woman I used to be was replaced by a shadow of exhaustion, a broken shell of despair. The weight of my son's condition pressed down on me, squeezing out any remnants of joy or hope.The mental, emotional, and physical distress from the daily battles left me feeling defeated and beyond repair. 

     I was drowning—and I mean drowning—in a sea of frustration, anger, and sorrow, gasping for air but never quite finding relief. I couldn't understand why I harbored such negative feelings towards Justin or why he wasn't progressing despite all my efforts. Despite all his efforts. The emotional strain gnawed at my sanity, turning love into resentment and care into obligation. I was doing everything in my power, yet it felt like there was nothing more I could do. Each day blurred into the next, a never-ending loop of struggles and heartbreak.

It was around the time that I lost myself that I thought, for the first time, I wish Justin’s father would take him. The pain of that thought was unbearable, a testament to how far I had fallen. The guilt and shame I felt were overwhelming, further deepening my sense of anguishI was haunted by the belief that I was failing as a mother, which meant, in my mind, I was also failing as a woman, as a human being. Fear of the future paralyzed me. I felt trapped in a relentless storm with no end in sight. Depression mode: Activated.

     I want to interject here, from where I sit today, and say that this subject should not be controversial, nor should there be shame, guilt, blame, or self-loathing over these emotions. The stigma exists because, as parents, we are often unaware that we have been conditioned to believe that loving our children unconditionally comes with certain conditions. It doesn’t. The nature of unconditional love, and how we experience it as human beings, gets to also be unconditional and, in some cases, relative. I love my son unconditionally and fought feelings of resentment against him because I’m human. I love my son unconditionally, and being his mother has caused me significant trauma because of the way society received him (and, again, because I’m human). I love my son unconditionally, and being his mother has been the hardest thing I have ever done. There is no shame in these emotions; they carry, within them profound insights and avenues for improvement.

     What I learned is that I resented the situations we were in due to his behaviors which were beyond his control. There were many times his actions caused me absolute agony, but loving him unconditionally meant being aware of it entirely. Denying his behaviors and how they affected me never served him in positive ways. At a certain point, I had to learn to give myself permission to be human and find grace for myself, and that looked like changing my thoughts to: Yes, sometimes his behaviors cause me emotional turmoil, and that doesn’t mean I don’t love him; it means I’m human. Yes, my life looks nothing like the one I’d imagined for us all those years ago, and that feels hard and disappointing in some ways—that doesn’t mean my love is conditional; it means I’m human. My emotions are, and always were, valid. For that matter, so are yours, dear reader.

     If you have a partner, share your feelings with them; chances are they feel it too, and you are not as alone as you may believe. Again, these are not negative emotions towards our children, just the situation we find ourselves in. We, as parents, have also been traumatized, and it is okay to admit that to ourselves. It is okay to think, Wow, this isn’t what I thought it’d be at all. In fact, being a parent to this particular child has traumatized me, and I absolutely wouldn’t trade this child for the world. We don’t have to resent the actual person that they are in order to resent the reality of what we sometimes encounter throughout this journey. (Especially if your journey has been as chaotic as ours, it’s normal.) It does not mean we love them any less; it does not mean we are terrible parents. It means we are human, and we have experienced trauma at the hands of our children’s conditions. If you have an autistic child who has violent behaviors/tendencies, please say these words out loud: I. HAVE. EXPERIENCED. TRAUMA. AT. THE. HANDS. OF. MY. CHILD’S. CONDITION. 

     Allowing ourselves the freedom to acknowledge honest emotions, however heavy they may feel, will benefit us and our children in the long run, regardless of how much society wants to shame us for doing so. I do not regret any feelings of resentment I carried over traumatizing situations with Justin, because they made me open my eyes to the bigger picture—the more significant issue.

LOSING CONTROL

     After losing all that we lost in those eight years, the only hope I could hold on to was the possibility of a resource opening up. Any day now, any day now. The emotional and mental battles had started waging all-out war in my head, and I was losing big time. I became more withdrawn, as my support network was non-existent. The constant stress and unpredictability caused me to lose my financial stability. Without reliable care for Justin, maintaining a steady job became impossible. The isolation, combined with the financial strain, pushed me to the brink. I started realizing I was losing control of everything.

     I had developed a keen skill for keeping the resentment I was feeling towards Justin in the farthest reaches of my mind. I would force it down the second it would arise and shame the absolute shit out of myself. I could not—would not—believe that I could be having such thoughts. After so many friends walked away, I started blaming him, and after so many relationships failed, I continued blaming him. Every job loss. Every sleepless night. Every trauma. The resentment I had for him just kept multiplying. It became so hard to ignore that I honestly thought I was just like everyone else. That Justin would even lose me eventually. 

     The guilt I felt over realizing this resentment was swift, profound, and dominating—it ate me alive. Just absolutely wrecked me. I overcompensated in every single way that I could, especially through guilt parenting and enabling behaviors. I felt so ashamed that I actively participated in his regression. If he cried for something, I handed it over. If there was a behavior to correct, I let it slide. The only thing I ever forced him to do during that time was attend to his hygiene. Everything else, every other aspect, I began to enable. 

I would let him choose whether or not he’d attend school; he seemed to come home every other day anyway, so why force him to be somewhere he didn’t want to be? I demeaned and debased myself so intensely that I convinced myself that Justin knew I was having what felt like less-than-maternal thoughts, so this was simply momma kissing the boo-boo. I didn’t realize I was adding yet another layer of complex psychological conditioning to my son’s brain by making the world, as he knew it, bend to his will. I pretended not to be counting my ever-growing list of what I deemed to be parental shortcomings, but my spirit was keeping a strict tally.

     I had spent his entire life, up to that point, focused on raising him within the context of his autism; it had become easy to overlook that he was also like every other child—sneaky, manipulative (in cute, normal ways, of course), and fully capable of learning how to play me. And he did. And I let him. While many of his behaviors were related to his autism, he started exhibiting behaviors that were a direct result of my parenting and his unique personality. He also showed behaviors that I wish I had paid more attention to, including all of the “age-appropriate” milestones that I missed because I was consumed by everything else. I can never get those years back. While I don’t blame anyone for this, not even myself, I do wish the world had been different—more accepting and understanding. I often wonder how different our lives might have turned out had that been the case. 

     I had lost control of everything, and the only thing I could manage was my reaction to the guilt I was suffering from. (For the record, I don’t suggest parenting from a place of guilt; it doesn’t work out well for anyone involved.) I clung so tightly to being a “my child can do no wrong” parent that it was also causing Justin to lose control. He needed routine, stability, consistent behavior correction, consistency, and far more mental strength than I could provide. I wish someone had explained the difference to me—that it wasn’t my son I resented, but the situation. Maybe, then, the guilt wouldn’t have dictated quite so much of our lives, but we only know what we know when we know it. 

     There was, and still is, no open, safe space to have that conversation, which is why you’re holding this book in your hands right now—I’m creating the space I needed for so long. Fear had, for so long, kept me silenced, terrified of speaking out, so the last thing I was going to do was admit out loud, “I resent my own child, and that resentment is growing with each passing day. I don’t want to be this way, but I have no clue how to change it.” Even if I wanted to, who could I tell? I had no friends or family with whom I felt safe enough to be honest. Unfortunately, his father remained in denial, and whenever we spoke, he would blame me for all of the behaviors. If it happened on my time, it was my fault. This was an opinion I had some practice swallowing, but it didn’t make it hurt any less when I heard it.

     Please know that if you are not feeling safe or heard, I see and hear you; I am here for you. Maybe if I had felt safe, I wouldn’t have lost control the way that I did.

     The intense emotions running through me started to engulf me to the point that I completely lost control of the fragile balance of my mental illnesses. I had been broken down in so many ways that everything I knew that helped keep me stable vanished, seemingly with the snap of a finger. Still there, albeit weak, one second and gone the next. I needed mental-health care in a significant way, and I was too broken down to seek it. I was too misinformed and ashamed to seek it. I was so conditioned to “toughen up and take it.” I wish, when I was younger, when the signs first appeared, that someone would have taken notice and fought for me the way I was desperately trying to fight for my son. I needed someone to say, “Okay, here is an entirely safe space; tell me everything, and we will find support together. We will figure this out together”. Together. How long had it been since I’d heard the word? This lack of a safe space—this lack of community—was just another resource I’d added to my ever-increasing wish list of things I was certain I’d never see. Another finger pointing to the broken system in which I was trapped. Another symptom of my darkness.

     The anxiety, depression, and triggers continued to escalate, until what I thought was a heart attack sent me to the emergency room. It was a full-on panic attack, worse than I had ever experienced. Those poor doctors probably thought I was insane. (Secretly, I wished, for some time, they had thought that, as it might have prompted them to take my concerns more seriously.) I called 911, in my twenties, for a heart attack. Face. Palm. I had experienced anxiety attacks before—hyperventilation, sweats, shaking, tremors, the works. Not once had I experienced one to this magnitude. 

     I had been building up tension for two weeks because—get this—Justin had not had a meltdown. I was spending all that time mentally preparing for something to go wrong at any moment. I was sleeping super lightly, and I was barely eating. I was waiting. Waiting on the proverbial other shoe to drop. Two weeks without chaos sent me into the worst panic attack I have ever experienced, still to this day. I was overloaded with anticipation. With dread. With adrenaline and cortisol. I was worried because everything was too “okay.” Because nothing was terribly wrong. Those are just two of many weeks—”good” weeks—I missed out on because I was so conditioned to be fearful, because I lived in chronic terror over what the next second might bring.

     That was when I was introduced to a benzodiazepine called Klonopin. 

     That was when I lost control.